Improving Patient-Centered Communication about Sudden Unexpected Death in Epilepsy through Computerized Clinical Decision Support.

BACKGROUND: Sudden unexpected death in epilepsy (SUDEP) is a rare but fatal risk that patients, parents, and professional societies clearly recommend discussing with patients and families. However, this conversation does not routinely happen. OBJECTIVES: This pilot study aimed to demonstrate whether computerized decision support could increase patient communication about SUDEP. METHODS: A prospective before-and-after study of the effect of computerized decision support on delivery of SUDEP counseling. The intervention was a screening, alerting, education, and follow-up SUDEP module for an existing computerized decision support system (the Child Health Improvement through Computer Automation [CHICA]) in five urban pediatric primary care clinics. Families of children with epilepsy were contacted by telephone before and after implementation to assess if the clinician discussed SUDEP at their respective encounters. RESULTS: The CHICA-SUDEP module screened 7,154 children age 0 to 21 years for seizures over 7 months; 108 (1.5%) reported epilepsy. We interviewed 101 families after primary care encounters (75 before and 26 after implementation) over 9 months. After starting CHICA-SUDEP, the number of caregivers who reported discussing SUDEP with their child's clinician more than doubled from 21% (16/75) to 46% (12/26; p = 0.03), and when the parent recalled who brought up the topic, 80% of the time it was the clinician. The differences between timing and sampling methodologies of before and after intervention cohorts could have led to potential sampling and recall bias. CONCLUSION: Clinician-family discussions about SUDEP significantly increased in pediatric primary care clinics after introducing a systematic, computerized screening and decision support module. These tools demonstrate potential for increasing patient-centered education about SUDEP, as well as incorporating other guideline-recommended algorithms into primary and subspecialty cares. CLINICAL TRIAL REGISTRATION: clinicaltrials.gov, NCT03502759.

American Academy of Pediatrics Newborn Screening Task Force recommendations: how far have we come?

The partnership of the Health Resources and Services Administration (HRSA)/Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP) for improving health care for all children has long been recognized. In 1998, the establishment of the Newborn Screening Task Force marked a major initiative in addressing the needs of the newborn screening system. At the request of HRSA/MCHB, the AAP convened the task force to ensure that pediatric clinicians assumed a leadership role in examining the totality of the newborn screening system, including the necessary linkage to medical homes. The task force's report, published in 2000, outlined major recommendations for federal, state, and other national partners in addressing the identified barriers and needed enhancements of the care delivery system. Today, manifestations of the task force's recommendations are evident, many of which occurred under the leadership of HRSA/MCHB and the AAP. These activities are detailed in this article, with a discussion of future progression toward a quality, consistent, coordinated system of care for children identified with positive newborn screening results, their families, and the child health professionals who care for them.